Essay: Alzheimer's Just Killed My Dad and The Chinese Shame is Finally Over

Many immigrants — even after decades in the U.S. — hang onto the view that dementia, of which 72 to 80 percent is caused by Alzheimer’s, is part of normal aging

Benny Kwong, 92, his wife Evelyn, 88, and the author enjoy Father’s Day brunch at Pasadena Highlands, an assisted living facility, on June 19, 2016. Benny passed away the next day from complications due to Alzheimer’s.Courtesy of Ray Kwong

June 27, 2016, 1:49 PM GMT / Updated June 27, 2016, 1:49 PM GMT

By Ray Kwong

My dad died last Monday at 92 from complications due to Alzheimer’s. And as I grieve over the loss — trying to shake the image of his lifeless body lying in the hallway where he collapsed — it occurs to me that my struggle with Chinese shame is finally over.

Allow me to explain as my way to cope with my sadness mixed with relief, say goodbye to a man who will forever be my dad, and, most importantly, to help others like me who feel they got dealt the misfortune cookie of shame.

For starters, while there is no doubt that Alzheimer’s disease is a horrible affliction for anyone that gets it and those it affects in turn, when you’re of Chinese descent, or other East Asian shame-based lineages, the extra cultural baggage makes life a living hell. Here’s a sampling of some of the punishment I had to deal with:

No one, not even aunt #7, ever thought dad had Alzheimer's

My mom said "kill me now” every time I brought up assisted living

The word “yes” took on new meaning (“no,” go away")

Attaining harmony meant not having talks cranked up to 11

The loss of “face” became a threat more serious than meals without rice

Being #1 son was no longer a perk

My dad didn’t fight for the bill anymore at dim sum

He also suddenly thought Panda Express was authentic

Granted, Chinese are not all alike. But many immigrants — even after decades in the U.S. — hang onto the predominant Chinese view that dementia, of which 72 to 80 percent is caused by Alzheimer’s, is part of the normal aging process. Worse, they literally call dementia — which is not itself a disease but instead a wide range of symptoms that reduce a person's ability to perform everyday activities — “old age, dull-witted disease.”

The author, left, with his father, Benny Kwong.Courtesy of Ray Kwong

“To this day, most Chinese people don’t even know Alzheimer's is a disease,” said Dr. Gerald T. Lim, assistant professor of neurology at the USC Alzheimer’s Disease Research Center, of perceptions in China, where more than 9.5 million are afflicted by the disease and as many as 90 percent of cases go undiagnosed.

As astounding as that sounds, it’s even more appalling when you consider that as many as one out of every five Alzheimer’s patients worldwide is Chinese, according to Alzheimer’s Disease International's latest World Alzheimer Report.

For the majority of Chinese, it’s simple. “When an older person starts to lose his memory, the people around him say it’s just part of getting old, no one can escape it and that everyone will be like this eventually,” Lim said.

"To this day, most Chinese people don’t even know Alzheimer's is a disease."

With awareness levels so low and the Confucian concept of filial piety so strong, caring for dementia sufferers in China falls on family members with little or no support from the state.

“It is assumed that families will take care of these things, and family members, in turn, feel they should be able to handle it by themselves,” said Dr. Eric Miller from Virginia Tech, an expert on aging and intergenerational relationships in China.

Born Identity

In July 1941, Kwong Fook Mah, 17, set foot alone on the docks of the Port of Los Angeles after a three-week voyage from Hong Kong aboard the SS President Coolidge. His parents, having fled to Macau from Japanese-occupied Zhongshan, had planned to send him and his four siblings one at a time to the safety of America, a world away from escalating conflict between China and Japan and an ongoing Chinese civil war that had no end in sight.

But when the U.S. entered the fray of World War II later that year, the plan was trashed. And young Kwong, the first to make the journey, never saw his parents, sisters, or brothers again.

“Convincing my mother that dad had Alzheimer’s was not a walk in the park,” says the author. In Chinese culture, stigmatized people and their family members experience a ‘diu lian’ (loss of face) that is perceived individually as shame and guilt and socially as a loss of status and respect.Courtesy of Ray Kwong

Distant relatives took him in. He lived in Chinatown, enrolled in high school, and worked as a busboy, adopting an English name from one of the most popular celebrities of a war-torn decade, radio star Jack Benny.

With the U.S. becoming a major ally of China against Japan, he tried to enlist in the army, spending seven months at Camp Howze, an infantry training center located in Gainesville, Texas, before doctors sent him home for having flat feet.

Long before Alzheimer’s robbed him of his understanding of visual images and spatial relationships, Benny was adept at ignoring visual images and spatial relationships. Photo from Christmas 1979.Courtesy of Ray Kwong

Disappointed, but not discouraged, he moved on, went to college and in 1951, landed a job at a major aerospace and defense contracting company, where for the next 40 years he worked on teams that engineered everything from the first U.S. soft landing on the moon and ion propulsion engines to night-fighting attack helicopters and laser-guided weapons systems now in service with over 45 militaries.

As recently as Father’s Day, the day before my dad passed away as I write this, my dad Benny could vividly describe nearly every detail of trips he took as a young boy to Shanghai to visit his father, who worked in the city as a trader. He just couldn’t remember what he had for breakfast — or much of anything else — and if not for oral histories and a lot of legwork, his immigrant story would be lost.

He had Alzheimer’s disease, a terrifying, degenerative brain disorder afflicting an estimated 5.4 million Americans. The malady slowly destroys memory and thinking skills, and eventually the ability to carry out the simplest tasks. Recent estimates say it is the third leading cause of death in the United States, just behind heart disease and cancer.

Feel the Burn

Denial is a common thing for everyone when it comes to the early stages of Alzheimer’s, but Chinese seem to take it to the nth degree, creating a barrier to timely diagnosis tougher to scale than the Great Wall of China.

For unfathomable reasons, Benny takes his young son to see Liberace and 100 dancing girls at the Moulin Rouge, a dinner theater that was the center of Hollywood night life in 1959. His son, five-years-old at the time, was not amused.Courtesy of Ray Kwong

My mother, for example, infuriatingly refused to accept or even acknowledge that my dad had Alzheimer’s, responding to every attempt to tell her otherwise with the evil eye and a terse reply of: “He’s fine.”

This, while he asked her the same question over and over like a broken record, “read” the newspaper upside down and couldn’t even recognize himself in family photos.

Older relatives weren’t much help either. “I just saw your dad and he’s eating” was a comment I often got, as if eating makes everything all right. (It’s a Chinese thing.)

This, while my dad had no clue what day it was, and was deathly afraid that someone would steal his underwear.

Friends of his generation, while well meaning, were also useless. “He doesn’t look like he has Alzheimer’s,” they’d say — never mind that you can’t tell that someone has Alzheimer’s just by looking.

This, while my dad struggled to recall their names, could not order from a menu and had trouble walking 10 feet without bumping into something.

Meanwhile, my dad insisted he was fine.

This, while he didn’t know how old he was, could not remember his grandkids' names and sometimes forgot to breathe.

It turns out there’s a reason for this madness. Not a good one, but better than none at all.

Benny, who died a week before his 63rd wedding anniversary, could never quite explain the circumstances behind this photo with two fellow American patriots. But his son approves.Courtesy of Ray Kwong

A Great Leap Backwards

As naive and primitive as it may seem, most Chinese Americans try to deal with their mental health issues as if they lived in the ancestral homeland — without outside help, even from doctors — for fear of the shame, guilt, and stigma that this knowledge might bring upon the family, according to the late Evelyn Lee, author of “Working with Asian Americans: a Guide for Clinicians.”

"It’s this skewed view based on the cultural beliefs of Chinese families within two or three generations of immigration to the United States that often delays diagnosis of neurodegenerative diseases like Alzheimer’s, amyotrophic lateral sclerosis, and Parkinson's, as well as treatable mental illnesses like anxiety, depression, and schizophrenia,” said Lim from USC.

In my dad’s case, my mother’s unflinching refusal to acknowledge that something was horribly wrong with him and her shame-driven obsession to keep his condition under the radar not only delayed my dad’s diagnosis, but delayed proper care and management of the disease for almost two years.

While drugs can’t cure Alzheimer's or stop its progression, they could have slowed his cognitive decline and helped manage memory loss, thinking and reasoning problems, and day-to-day function.

Don’t Make My Mistake

My bad for not taking things into my own hands sooner, but you don’t have to make the same mistake.

Do yourself a favor and make a point to recognize the early signs and symptoms of Alzheimer’s, and take your loved one to the doctor if you notice any of them.

Related

Don’t let older family members stop you from doing the right thing. Their fear of public humiliation and scorn — even the notion that Alzheimer’s or any mental illness reflects poorly on family lineage — is total bulls--t. You turned out OK, am I right?